Sunday, August 05, 2012

Find Charlotte at Charlottesjourneyhome.com

We’ve moved. Children’s Hospital has moved. Now it’s time for Charlotte’s Journey Home to move. I’ve decided to move to WordPress so that when I write I only have to use one platform (my other blog, Culture Bean, originated there. Like that blatant plug?).

Blogger has been home for seven years and I'm oddly grateful to the platform. "Oddly" because it seems odd to be grateful to a platform. But, on that fateful day when my mother said, "Why don't you start a blog?" (and, no, she had no idea what a blog was, just that I should have one!), there weren't a lot of choices. CaringBridge and CarePages were in their infancy and were not available to me, Children's Memorial did not have WiFi, and there were only 3 or 4 computers available to parents. The blog replaced an email circle, inspired by my late friend Jennifer, her husband Karl, and the courageous way they shared her illness in 2001.

My, how things have changed! Children's Memorial is now Lurie Children's. The hospital's website has a direct link to CarePages, internet in patient rooms, and, through a generous donation, iPads for use by long-term patients.

I no longer blog by the glow of the streetlight as Charlotte's Kangaroo pump clicks away feeding her. Today, I blog between notes as Charlotte attempts to practice the piano on her electric keyboard (hard to transpose songs when she only has 66 keys, but she gets kudos for trying).

So, it's time for a change. I've imported all previous posts to the new site and hope you'll join us there as Charlotte continues her spectacular journey.

Thank you, from the bottom of our hearts, for being with us throughout all of it.

2 comments:

I Just found this Blog about people & family's that have children with truncus & Have been reading Yours & Jessica's for like an hour on my IPhone haha. I am 21 years old, College student at Northern Michigan University and have had Truncus my entire life, a lot with ventricular tachycardia when I was 17. I would like to share my story with people that actually understand me but I'm not to sure how this blog thing works haha.

I hate moving out from home to home. Everything turns chaotic, we have to deal with the companies that rent the trucks, it means always a lot of effort, etc. My sister just moved for a year from her home in Conneticut to a Buenos Aires temporary rent, even thought she didn´t packet everything, moving things from one hemisphere to another was a truly nightmare. And in one year she will have to do that again!

In January 2005, our unborn child was diagnosed with Truncus Arteriosus, an uncommon, complex heart defect. On May 9, 2005, our daughter Charlotte was born (4 weeks early). This is the diary, and continuing updates of Charlotte's journey through her first surgery to life as a regular kid (we'll get there one day).